New report on cancer reveals majority of patients don't understand their condition

Every day in the UK, 740 people find out they have cancer(1) but, according to new research revealed today, almost two thirds do not fully understand what their diagnosis means(2).

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​The 'Cancer Information Maze' report, published jointly today by CancerBACUP, the Association of the British Pharmaceutical Industry (ABPI) and Ask About Medicines, concludes that people who have cancer feel lost in a maze of information and are failing to understand their condition. One reason for their confusion is that they have poor understanding of medical terms and phrases commonly used in consultations. For example, only half of cancer patients know it is not good news if your doctor tells you that 'the tumour is progressing'3

The report which will be presented to the Department of Health today by Ian Gibson, Chair of the All Party Parliamentary Group on Cancer, calls on healthcare professionals to develop 'information prescriptions' for patients which signpost them to the most appropriate sources of information, as well as encouraging them to ask questions.

Launching the campaign Joanne Rule, Chief Executive of CancerBACUP commented, "Information is set to replace money as the health currency of the future which suggests a whole new debate about equality between the well informed and those who are left in the dark. Cancer patients today are faced with increased treatment options, including innovative medicines. But if they lack information, they are unable to be as involved as they should be in all aspects of their care."

The survey also found that almost one in three people with cancer feel that cancer patients who are better informed get better care2. However, nearly 4 out of 10 people with cancer don't feel they know what questions to ask their healthcare professional about their treatment options, and only half feel encouraged by their healthcare professional to ask any questions2.

Joanne Shaw, Chair of Ask About Medicines, says, "It's vital that people with cancer are encouraged and empowered to ask questions, as patients who have a good knowledge of their treatment options are better equipped to make informed decisions about medicines and other treatments."

Kate Tillett, Chair of the ABPI's Involved Patient Initiative, added, "The conclusion of this report is that there is no substitute for a good open relationship between cancer patients and healthcare professionals who are able to help them through the cancer information maze. Therefore, we hope it will serve as a call to action to healthcare professionals to develop information prescriptions for their patients and encourage them to ask questions about their treatment."

4. Picker Institute. Is the NHS getting better or worse? An in depth look at the views of nearly a million patients between 1998-2004. 2005

Notes to editors:

CancerBACUP (www.cancerbacup.org.uk) is the only national charity that specialises in providing information on all types of cancer. All CancerBACUP services are free to cancer patients, their relatives and friends. CancerBACUP runs a freephone information service that is available on 0808 800 1234 (Mon-Fri, 9am-8pm).

The Association of the British Pharmaceutical Industry (www.abpi.org.uk) is the trade association for about a hundred companies in the UK that produce prescription medicines. As part of their role they have encouraged Datapharm to develop medicines information for patients which is available online at www.medicines.org.uk.

Ask About Medicines (www.askaboutmedicines.org) is an independent campaign to increase people's involvement in decisions about their medicines use. Ask About Medicines Week 2005 will take place from the 7th - 11th November, under the theme of Ask.

In 2004, the Department of Health issued a strategy document entitled 'Better Information, Better Choices, Better Health' which sought to improve access to information for all patients. Within this document, a number of initiatives were outlined as valid ways of strengthening the relationship between patients and healthcare professional through the provision of tailored information including 'information prescriptions' and 'power questions'.

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